Safe
March 2009 Issue #20
Pete Williams, USA, age 13
by Elaine Lyon
Dear Everyone;
Hello and Happy New Year!
I have been writing an article for everyone
in my head for some time now. And I am sure
that it will take me some tries to get what has
been in my head onto the computer.
Harbor
Teeth will be the first subject off my head.
With Pete IV we have had to have a good
number of baby teeth pulled. When he was
quite young Pete IV had to have about 6 top
baby teeth pulled. The permanent teeth came
in, but the roots of the baby teeth stayed. We
called him our shark. The baby teeth were out
front, and the permanent teeth were right
behind them. In the past two years Pete IV
needed to have two baby teeth pulled because
they were hindering the growth of the
permanent teeth. The last one was just
removed in October. And both baby teeth still
had at least one corner of root. I remember
that I needed to have baby teeth pulled. But I
do not know if it is because I was slow to
grow, or if it was for the permanent teeth to
come in so the braces could go on. Yes, I did
say that I was slow to grow. I was 4 foot 9
inches going into the ninth grade. Then I had
a growth spurt during the summer between
ninth & tenth grade. (Not to adult height.)
And I had a girl growth spurt the summer
between the tenth & eleventh grade. And my
adult height topped at 5 foot 8 ½ inches. Pete
III (dad) remembers that he did more of his
growing in high school also.
This last summer both my children started
puberty. Pete IV at 13 & Natalie at 11. My
girl started the emotional mood swings the
summer when she was 8. Lord help us with
two children in full swing puberty. On most
things, we have been doing pretty well. I
have been watching Pete IV and his moods
quite closely since I read that some parents
have said that their boys have become
physical when they experience the puberty
mood swings. I have been noticing a monthly
mood swing for Pete IV. And the last month,
he pushed a female student in his P.E. class
and threw something at a fellow male
classroom classmate. As far as I know, this
has been his most physical month. And I
have been in his classroom every Friday for
the last three years. So his teachers know that
I am available to talk. But the part that I am
really interested in, is that Pete IV seems to
have regressed in some mental areas. Pete IV
has been having more trouble getting words
and ideas from his thoughts to his mouth.
And you can see that he is thinking about
something, but he can not tell you about what
he is thinking. He works really hard trying to
get his brain to work for him. Since it has
been scientifically proven that girls loose their
minds during puberty, (My words, not the
scientist’s words.) I am hoping that this
setback will balance itself out after his
hormones have balanced out.
In August, both our children had their
annual check up. Now, when we measure
Pete IV here at home, we are happy with his
growth. But we do not get an absolute about
his height, in case we are not measuring
correctly. So when we confirmed that he had
grown 4 inches in a year, we were really
excited. This has been the most growth Pete
IV has had in his 13 years that we can
remember. And he has added some height
since August. We are curious as to if this is a
puberty growth spurt. But happy just the
same.
We also would like to say Thank You! for
the information on height expectancy with
comparison to parent height! We know that it
is a small insight, but it is helpful. Well, I
have typed all your eyes off. So I will stop
now. If I think of more to write about, I will
try to get it down sooner than later.
Elaine Lyon
The Williams Family
Debbie, UK
Happy10
th
Anniversary
2009marksthe10
th anniversaryof theFHS
Support GroupandtheSafeHarbor newsletter
.
Special thanksgooutfirsttoJanPassmore mom
(
of Cody for her encouragement, experience,
)
visits, and advice to me all these years
.
Secondly, I wouldliketothankHelenFehr She
.
hasbeenafaithful penpal andfriendandhas
freelysharedwithusher experiencesasanFHS
adult. I wouldalsoliketothankeveryparent who
hassentinapictureorarticle Thesharingofour
.
experiencesisreallyhelpfultousall
.
HappyAnniversary
!!!!
FHSMedicalStudy
Afewweeks ago we heard fromthe
doctorsinchargeof theFHSstudy They
.
stated that they are in the process of
gettingtheprojectapproved Theyhopeto
.
have the final approval soon and will
contact us when that occurs In the
.
meantime, I amcontinuingtoaddfamilies
tothestudy If youareinterestedplease
.
contact meandlet meknow Thestudy
.
canbedoneanywhereintheworldusing
your own personal doctor It simply
.
consistsof fillingout asurvey parent and
(
doctor andabloodsampleof theFHS
)
childoradult,bothparentsifpossible,and
oneunaffectedsibling sister or brother
(
that does not have FHS This study
).
hopestoidentifyany“FHSgene”that will
assist in diagnosing FHScases in the
future, as well as collecting information
thatcouldpossiblyhelpintreatingourown
childrenadultswithFHS
/ .
Thestudy is beingconductedjointly by
JohnsHopkinsHospital andthe
National
BirthDefectsCenter
.
We are also still planning on having a
“convention” for any families willing to
attend Iwill leteveryoneknowassoonas
.
Ihearanythingfromeitherofthedoctors
.
Update on Mitchell in Australia
Mitchell had a course of three injections to
stimulate puberty because it just wasn't
happening. He will be 16 this year. The
course of three injection was given one a
month for three months. They have done
their job.
He is the 9th grade at Ulverstone High and he
is catered for really well there.
He loves High School and they have his
school work modified to suit his needs.
He has grown 3 centimeter's and gained
about 2 kilo's so we were all pleased
with that. He is now about 5 feet tall, not sure
of the weight.
Hope you are all going along OK and I am
here if you think I might be able to help.
Love and Hugs Lyn Leedham
Tasmania, Australia
Ronnie, USA, age
The Calcium Factor?
Many of us parents have asked the very
serious question,“Whatcan we do to help our
FHS children?” I may have a very good
answer. First of all,here is a list of FHS
.
“symptoms”,or manifestations of Floating
Harbor Syndrome that either all,or some FHS
children or adults have :
:
stubbed fingers
shortened bone length height
( )
lacunar skull porous skull bones
( )
hip bone problems
delayed bone growth
pre puberty osteoporosis
I think it is pretty obvious that all of these
problems have to do with either the lack of
bone growth, or lack of density in the
bones. This could very possibly be related
.
to the absorption of calcium. Some of the
.
FHS children, my son included are BORN
( )
with cataracts. These are caused by
.
calcium deposits on the eye lens. So if
.
there is calcium in their bodies,maybe it is
not being absorbed? And instead is
floating around being deposited in the
wrong places?Or maybe their bodies just
can t “use” the calcium that they are
'
getting?I m not sure,but I do have a few
'
more interesting observations, and a
possible way to help this problem. Stay with
.
me :-).
Some of the girls lose their hearing at a young age
.
I am in contact with an ear, nose and throat doctor
who is working with an FHS girl, and he says that
the cause of hearing loss for her is a problem with
the 3 smallest and most fragile bones in the
( )
body–which are in the ear. We have a 4 year old
.
and a few 20 year olds in our support group --girls
(
and boys that have osteoporosis. That is what
) .
old ladies get when their bones lose density .
.
FHS children always have“delayed bone age” .
.
This means that when an xray of their hand is
-
taken to measure how much the bones have
actually calcified (turned from cartilage into actual
(
BONE ) they are very delayed-- like years. So
) -- .
again, they are not absorbing the calcium in order
for this to take place. This could also explain why
.
they have large ears and noses. Ears and noses
--
do not consist of bone --they consist of cartilage
-- --
so they grow at a“normal” rate , while the bones
don t and end up shorter, especially compared to
'
their large noses and ears. Also, calcium is a
.
muscle relaxant and is calming. Remember those
--
“puberty rages”?
So,with all of these facts in mind,here is what we
have chosen to do for our son. We are giving him
.
daily doses of an inexpensive, pleasant tasting
-
supplement called “CoralCalcium”. see picture
( ).
It is easily available here in the USA at any Wal
-
Mart grocery
store
. It costs about $7 a bottle and
lasts about 2 weeks
.
If you are in another country and they don t have
( '
this they probably sell something similar, just ask
for a liquid calcium supplement. It is drinkable
.)
and tastes pretty good. We sometimes give it to
.
him in milk. We are also giving him much more
. (
milk than we have before. This supplement also
.)
contains Vitamin D which helps in the absorption
of calcium
.
We are doing this because we have NOTHING
to lose and everything to gain,even though he
is post puberty. I wish we would have been
- .
aware of some of this when he were younger
when his bones were still forming and
growing.
There is no harm in taking a few extra healthy
supplements, and great good could come out
of it; bone growth height ,stronger, denser
( )
bones,hearing,not to mention any number of
positive side effects that are somehow related
to all of this. And again,we have absolutely
.
nothing to lose except about $3 a week,
.
which is nothing compared to what we have to
gain,especially if what we are doing will help
our son in anyway.
.
